Good news! No infection apparent. Better news!! They are not going to re-insert the food tube. I can't express how good it feels to be tube free. I can now go out at night. I don't have to listen to the pump whiring and squealing and beeping at me any more. The nightly ritual of preparing the formula and creating excessive latex medical waste is over. At least for now.
Last evening, Mary and I went down to the basement to watch some television. Pretty much a nightly ritual. Coming up the stairs at bedtime, it was shocking to experience the lack of parasitic baggage to which I had become accustomed. I felt so good! Tears actually came to my eyes.
Now, to go about the job of eating enough to maintain my weight. I have permission to lose 5 pounds. Lose more than that and the tube goes back in.
Wednesday, October 31, 2012
Tuesday, October 30, 2012
Unplugged
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I've been having problems with my J-tube. I've been watching the 10 inches or so of tube that protrudes from my belly become lined on the inside with tiny globs of food formula. They did not seem to wash through with water pressure from a syringe. Dr. Scott suggested that Coca Cola had been known to eat them away so I tried a Coke flush a couple weeks ago. It really only made those globs a darker shade of beige.
And then few days back, I was getting some cramping pains directly below the protrusion spot. Shortly after, I noticed that the hole that the tube comes through, sort of an "inny" belly button, was becoming to become irritated. I felt kind of sick too. A white collar formed and the skin around it became red and very sore. I suspected an infection. It was Saturday and so I waited it out until Monday morning to call my Doctor's office. They agreed that it should be looked at and made an appointment for me to come in Tuesday (today) at 2:00pm.
Monday night, after dinner, I hooked up the food pump as usual, being extra careful handling the tube as my belly was very sore. I decided to go down to the basement to watch a little storm coverage. Now I've always wondered what the tube looked like inside my body and was curious how long it extended in order to reach my jejunum. (The "J" in J-tube). I knew that there was a balloon on the inside of my body cavity that prevented it from pulling out. While focusing on the belly side of the tube, I ignored the long tube that stretches to the food pump that I had strapped in a backpack hanging from my shoulder. I managed to step on it while going down the stairs and felt a painful tug. I was a bit surprised to discover the balloon was now on the outside. The tug had been strong enough to pull it through. The rest of the tube, about 4 inches, came out easily, followed by a small stream of ping-tinged fluid. I grabbed a handy paper towel and plugged the hole and went back upstairs to ring the Lacks doctor on call.
In the picture (above), I am holding the valve where the pump plugs into the J-tube through a another long tube (the one I stepped on) that attaches through that blue rubber junction. I normally tape it up good so that it remains attached while food and water is being pumped. You can see the amber colored balloon, which is normally on the inside and if you look carefully, you can see the clear, rubber stopper which is normally on the outside. (See picture below taken by Alice Peterson on October 9, if you dare.)
My 2:00 medical appointment will now be about whether The J-tube needs to be re-inserted in addition to establishing whether there is some infection going on. But I have to say that it feels GREAT to have that miserable tube gone. The tenderness is gone too. It feels much better in general. Of course the downside of not having the tube re-inserted is that I will lose a bunch more weight. That nightly pump ritual keeps at at a normal, proportional weight for my height and gives me energized mornings. For now, all my sustenance must pass through my tiny stomach in my chest cavity. Every meal is small and each one sits there at the top of my diaphragm for a half hour giving me an uncomfortable gut ache. Meals are just no fun. Everything is a trade off. But for now, I am enjoying my naked belly and the lack of protruding rubber for the first time in 6 months.
Thursday, October 18, 2012
And the CT scan says....
... all good news. The CT scan results were, as expected, positive in that they showed nothing new and no new growth on the liver tumor. I'd quote the report except they neglected to do the printout in my haste to get out of there. It was the last appointment of the day.
In other good news, I just learned (while I was at the store buying feminine products for my ladies) that the Detroit Tigers swept the playoffs and are headed to the World Series. I've seen none of it so far. And if I were superstitious, I should probably consider not watching the World Series so as not to jinx the streak. I only watched part of two different Tiger regular season games this year and they lost both.
So where do I go from the best possible CT scan results moving forward? I wanted Dr. Scott to talk of some far off future where they'd check in again to make sure everything was still cool. Instead, he talked about wanting to keep a close eye on me. Maybe a chest x-ray and blood test in three to four weeks. Three weeks!? Really!!? I was thinking it would be sometime after the first of the year.
The thing is, he's waiting for the Lymphoblasic Lymphoma to raise it's ugly head. The lion's share of the summer chemo was mostly about the metastasized esophageal cancer. He chose a regimen that took a swipe at the lymphoma but to really attack and kill it is a two-year, intensive chemo blitzkrieg. Quality of life would be very low and in all likelihood, I would not survive the metastasized esophageal cancer in that period. He recommended I go with the "quality of life" and I am totally ready for that right now. Quality of life, here I come!
In other good news, I just learned (while I was at the store buying feminine products for my ladies) that the Detroit Tigers swept the playoffs and are headed to the World Series. I've seen none of it so far. And if I were superstitious, I should probably consider not watching the World Series so as not to jinx the streak. I only watched part of two different Tiger regular season games this year and they lost both.
So where do I go from the best possible CT scan results moving forward? I wanted Dr. Scott to talk of some far off future where they'd check in again to make sure everything was still cool. Instead, he talked about wanting to keep a close eye on me. Maybe a chest x-ray and blood test in three to four weeks. Three weeks!? Really!!? I was thinking it would be sometime after the first of the year.
The thing is, he's waiting for the Lymphoblasic Lymphoma to raise it's ugly head. The lion's share of the summer chemo was mostly about the metastasized esophageal cancer. He chose a regimen that took a swipe at the lymphoma but to really attack and kill it is a two-year, intensive chemo blitzkrieg. Quality of life would be very low and in all likelihood, I would not survive the metastasized esophageal cancer in that period. He recommended I go with the "quality of life" and I am totally ready for that right now. Quality of life, here I come!
 |
| You thought I was kidding regarding my whereabouts during the final innings of the Tiger's playoff sweep? |
Monday, October 15, 2012
Strangely obsessed
What does a man think about after spending a summer being disappointed by the experience of eating? I'll give you hint: it's a four-letter word that starts with "F".
For the last few weeks I have found myself being food-obsessed. When people look at my far-away expression and ask me what I am thinking about, it usually has something to do with what I am cooking for dinner. You can ask anyone in my immediate surroundings who has spent some time with me recently and they will confirm that I am kind of crazy in this department right now. I was caught the other day sniffing day-old caramelized onion residue from the edge of my cast iron pan and I was really enjoying the experience.
To be clear, I am not eating much of this food. I am researching it, shopping for it, and cooking it for my family. The sight, smell and consumption by others has been a surprising pleasure for me. I've got my handful of go-to foods that I eat that aren't too disappointing and swallow easily. I anticipate that this list will grow as I distance myself from chemo and thrush. And I try everything, looking for that next taste or texture that will feel good in my mouth and move easily down my throat. I just discovered that a shredded cabbage salad worked great having given up on greens and other vegetables. Bread in any form, including pasta, is still in the "disappointment" category as are sweet things. I can manage mildly sweet things like a flavored yogurt, but ice cream, chocolate, jams and candies are completely lost on me. Peanut butter is my biggest loss. I always considered it a staple and one of my favorite flavors. I have to preserve that one in my memory and olfactory because in my mouth it just makes me sad.
Speaking of peanut butter, I just learned why Costco no longer carries the Kirkland natural peanut butter. We've been missing it for a while. (Marlee has never really had the regular non-oily kind and turns up her nose at Skippy and Jif). As it turns out it has to do with stupid people. Evidently, customers would buy it, open it, see the oil at the top and think it was spoiled so they return it. Costco was throwing away tons of perfectly good, returned peanut butter every month (this notion kills me!) and finally decided it was not worth it. The guy at the checkout says there is a new, 3rd party natural brand but it is now kept in the refrigerated section.
But I digress. Do a few food anecdotes really betray an obsession? The digression really is one of the symptoms. I have all kinds of food anecdotes and all the time! I'm following food blogs, watching food channels, being sidelined by Facebook photo postings of friends' dinner plates, taking gratuitous trips to the grocery store, reading cookbooks, asking people to describe what they had for lunch, and imagining how good a Reuben sandwich would taste. Sometimes an odd ingredient or spice will pop into my head and I'll start Googling recipes to see what could be created with it. Send me to the grocery store with a list and I'll come back with twice as much. I bought pink Himalayan salt the other day. It's pink and it tastes exactly like salt. Supposedly it is mined in the Himalayas and has trace mineral elements that make it special. I'm sure.
Later today, the food mill comes out and I'll be making homemade peanut butter and fresh squeezed cider from Honeycrisp seconds that are selling at Kingma's for a dollar a pound.
Obsession is not a good thing. At dinnertime, when Mary comes home from work looking to unwind, she finds a crazy man in her kitchen. I'm hoping this phase will soon pass. As I can begin to eat more foods I'll begin to be satisfied in more ways than just visual and smell. For now, the ritual of hooking up the food pump with 4 cans of Pivot 1.5 each evening is the anti-climax of each day. And each morning starts with a serving of Greek-style yogurt. I am perfecting my rice pudding recipe which will be an after-breakfast treat. Cardamon was a nice touch.
Thursday I'll have my CT scan results, which I predict will be stellar. Next week is another Endoscopy dilation to stretch out my throat and make swallowing easier. Clear sailing after that.
 |
To be clear, I am not eating much of this food. I am researching it, shopping for it, and cooking it for my family. The sight, smell and consumption by others has been a surprising pleasure for me. I've got my handful of go-to foods that I eat that aren't too disappointing and swallow easily. I anticipate that this list will grow as I distance myself from chemo and thrush. And I try everything, looking for that next taste or texture that will feel good in my mouth and move easily down my throat. I just discovered that a shredded cabbage salad worked great having given up on greens and other vegetables. Bread in any form, including pasta, is still in the "disappointment" category as are sweet things. I can manage mildly sweet things like a flavored yogurt, but ice cream, chocolate, jams and candies are completely lost on me. Peanut butter is my biggest loss. I always considered it a staple and one of my favorite flavors. I have to preserve that one in my memory and olfactory because in my mouth it just makes me sad.
Speaking of peanut butter, I just learned why Costco no longer carries the Kirkland natural peanut butter. We've been missing it for a while. (Marlee has never really had the regular non-oily kind and turns up her nose at Skippy and Jif). As it turns out it has to do with stupid people. Evidently, customers would buy it, open it, see the oil at the top and think it was spoiled so they return it. Costco was throwing away tons of perfectly good, returned peanut butter every month (this notion kills me!) and finally decided it was not worth it. The guy at the checkout says there is a new, 3rd party natural brand but it is now kept in the refrigerated section.
But I digress. Do a few food anecdotes really betray an obsession? The digression really is one of the symptoms. I have all kinds of food anecdotes and all the time! I'm following food blogs, watching food channels, being sidelined by Facebook photo postings of friends' dinner plates, taking gratuitous trips to the grocery store, reading cookbooks, asking people to describe what they had for lunch, and imagining how good a Reuben sandwich would taste. Sometimes an odd ingredient or spice will pop into my head and I'll start Googling recipes to see what could be created with it. Send me to the grocery store with a list and I'll come back with twice as much. I bought pink Himalayan salt the other day. It's pink and it tastes exactly like salt. Supposedly it is mined in the Himalayas and has trace mineral elements that make it special. I'm sure.
Later today, the food mill comes out and I'll be making homemade peanut butter and fresh squeezed cider from Honeycrisp seconds that are selling at Kingma's for a dollar a pound.
Obsession is not a good thing. At dinnertime, when Mary comes home from work looking to unwind, she finds a crazy man in her kitchen. I'm hoping this phase will soon pass. As I can begin to eat more foods I'll begin to be satisfied in more ways than just visual and smell. For now, the ritual of hooking up the food pump with 4 cans of Pivot 1.5 each evening is the anti-climax of each day. And each morning starts with a serving of Greek-style yogurt. I am perfecting my rice pudding recipe which will be an after-breakfast treat. Cardamon was a nice touch.
Thursday I'll have my CT scan results, which I predict will be stellar. Next week is another Endoscopy dilation to stretch out my throat and make swallowing easier. Clear sailing after that.
Wednesday, October 10, 2012
Looking to the end of the year
That last week of chemo was pretty uncomfortable. It is true that the treatments are cumulative so that last dose seemed very hard to swallow. Nausea will likely continue for another week or two. My hands and feet are experiencing numbness; an expected but late-arriving symptom of Xeloda. This phase should pass shortly. I've been feeling chemically agitated at night and have not been sleeping that well. My blood numbers were a little low so I received another white cell booster shot along with some explanation as to why I was feeling more run down on the hemoglobin. I'm really tired of feeling sick and am especially missing food satisfaction. The "thrush" just won't seem to go away either but now that chemotherapy has subsided maybe my body will have a chance to recover. I've added some over-the-counter pro-biotic supplements to see if helpful bacteria will restore some of the natural body chemistry.
I probed my doctors and nurses to try and get some idea of what to expect now. I guess it is an observation phase. I'm getting another CT scan on Friday which will determine whether the liver tumor has shrunk and to make sure there are no new active hot spots. If all looks good (I'll meet Dr. Scott for CT evaluation a week from Friday) then it may be 3 months, taking me to the end of the year, before I need another scan to see what is happening. I like the idea of a brand new normal for a chunk of time. I'm ready for it. Wondering if it can spell the end of the food pump. That is a ritual that I am very ready to give up, and at the same time am nervous about getting enough nutrition down the hatch to keep me going. It would likely mean losing a bunch more weight. I like the feeling of 170 pounds on me but I think my 6-foot frame could handle losing 30-35 more pounds if necessary... though it would be pretty difficult to put that weight back on for the presumed inevitable follow-up series of chemotherapy next year. They like me being fat during chemo.
Today I am bidding adieu to Alice who has been visiting Michigan from California for the last 10 days. We had some really nice times that included cooking, watching "Breaking Bad, designated driving, chemo lounging, and even finishing up her 2011 New York taxes. She also took some photos of me on a beautiful autumn afternoon with her good camera. (I'll post a few of the better shots when she forwards them on to me.) One evening, Alice indulged me a marathon viewing of my old Super-8 film collection, mostly shot in the late 70's through the 80's. It was fun, especially looking at the stuff I shot when I was 18-years old and living in New York and experimenting with my then-new camera and all the possible frames-per-second shooting rates. Yesterday afternoon we stoked up a wood fire in the fireplace, first of the season, and played old familiar board games.
I am relishing occasional, morning conversations with those of my friends with daytime flexibility. Yesterday it was Steve VerBerg, visiting from Madison. I first got to know him at GVSU where he wrote for (and I believe, edited for some time) the college newspaper, The Lanthorn. We got to know each other better after graduation through a mutual friend. Somehow we established a fairly short-lived annual ritual of a road trip pilgrimage to the Ann Arbor Film Festival. The films were always in the experimental genre and several of the titles we saw are memorable to this day. Steve has been writing, editing and working in the newspaper industry since the 80's and it was interesting to me to talk about the state of journalism and the fate of newspapers; a pet topic for me. I made him listen to my stories too.
I've been enjoying other visitors as well: Darius, Deb, Stephen, Bill, Sim, Nancy, Lee, Mark, Scott, Margaret, Jeff, Steve Klamer, Girbe, Bob, Teresa, Patrick, Ann, Bruce, WenJo, Kim, Oscar, Ralston, Janet, and of course all my fantastic regional family members... and everyone else who I am forgetting at this moment. My friend Chad came by with an amazing little Farmer's Market care package along with a great conversation. Dan planted a garlic garden for me. Helen brought a troupe of volunteer high school labor to help me get my under-maintained driveway sealed. Gifts are never expected or thought to be needed, but I was truly touched by these thoughtful, meaningful gestures.
By the way, I can get out too and even meet for coffee or breakfast, or a not-so-brisk walk somewhere.
The next couple of weeks I am exploring doing a little client work. Time to get my editing chops back on the grid and see how that feels. I still have pretty good energy in the mornings. Looking to stretch them into good-energy afternoons and evenings.
I probed my doctors and nurses to try and get some idea of what to expect now. I guess it is an observation phase. I'm getting another CT scan on Friday which will determine whether the liver tumor has shrunk and to make sure there are no new active hot spots. If all looks good (I'll meet Dr. Scott for CT evaluation a week from Friday) then it may be 3 months, taking me to the end of the year, before I need another scan to see what is happening. I like the idea of a brand new normal for a chunk of time. I'm ready for it. Wondering if it can spell the end of the food pump. That is a ritual that I am very ready to give up, and at the same time am nervous about getting enough nutrition down the hatch to keep me going. It would likely mean losing a bunch more weight. I like the feeling of 170 pounds on me but I think my 6-foot frame could handle losing 30-35 more pounds if necessary... though it would be pretty difficult to put that weight back on for the presumed inevitable follow-up series of chemotherapy next year. They like me being fat during chemo.
Today I am bidding adieu to Alice who has been visiting Michigan from California for the last 10 days. We had some really nice times that included cooking, watching "Breaking Bad, designated driving, chemo lounging, and even finishing up her 2011 New York taxes. She also took some photos of me on a beautiful autumn afternoon with her good camera. (I'll post a few of the better shots when she forwards them on to me.) One evening, Alice indulged me a marathon viewing of my old Super-8 film collection, mostly shot in the late 70's through the 80's. It was fun, especially looking at the stuff I shot when I was 18-years old and living in New York and experimenting with my then-new camera and all the possible frames-per-second shooting rates. Yesterday afternoon we stoked up a wood fire in the fireplace, first of the season, and played old familiar board games.
I am relishing occasional, morning conversations with those of my friends with daytime flexibility. Yesterday it was Steve VerBerg, visiting from Madison. I first got to know him at GVSU where he wrote for (and I believe, edited for some time) the college newspaper, The Lanthorn. We got to know each other better after graduation through a mutual friend. Somehow we established a fairly short-lived annual ritual of a road trip pilgrimage to the Ann Arbor Film Festival. The films were always in the experimental genre and several of the titles we saw are memorable to this day. Steve has been writing, editing and working in the newspaper industry since the 80's and it was interesting to me to talk about the state of journalism and the fate of newspapers; a pet topic for me. I made him listen to my stories too.
I've been enjoying other visitors as well: Darius, Deb, Stephen, Bill, Sim, Nancy, Lee, Mark, Scott, Margaret, Jeff, Steve Klamer, Girbe, Bob, Teresa, Patrick, Ann, Bruce, WenJo, Kim, Oscar, Ralston, Janet, and of course all my fantastic regional family members... and everyone else who I am forgetting at this moment. My friend Chad came by with an amazing little Farmer's Market care package along with a great conversation. Dan planted a garlic garden for me. Helen brought a troupe of volunteer high school labor to help me get my under-maintained driveway sealed. Gifts are never expected or thought to be needed, but I was truly touched by these thoughtful, meaningful gestures.
By the way, I can get out too and even meet for coffee or breakfast, or a not-so-brisk walk somewhere.
The next couple of weeks I am exploring doing a little client work. Time to get my editing chops back on the grid and see how that feels. I still have pretty good energy in the mornings. Looking to stretch them into good-energy afternoons and evenings.
Tuesday, October 2, 2012
Last week of Chemo kicks off
My wish for a last minute reprieve did not materialize. At 8:00am I showed up at the chemo lounge for a final week of poison torture. I can do one more week standing on my head... well maybe sitting in a chair.
They were late calling me in for the requisite bloodwork and when I sat down in Dawn's chair (Dawn is the primo Phlebotomist), I got a bit of the story when the second Phlebotomist arrived (I don't know her name but based on one experience with her, she is on the opposite side of the competence scale from Dawn.) Dawn exclaimed, "Where have you been?". The D-list Phlebotomist glared back with a "You don't want to know" expression. I didn't want to know. I was only grateful to be sitting in Dawn's chair prepared for an efficient, nearly painless blood extraction.
When I moved on to my favorite comfy recliner in the lounge, I popped a greek yogurt with strawberries and assessed my surroundings. The lovely African American woman in my direct eyeline was quietly reading from a computer tablet. A sleeping older man in the lounge chair next to her was being attended by Nurse Linda, my nurse, and that meant she would be in the vicinity more often. Behind me on the other side of the half-wall was lots of chatter but it was all in Spanish and could be tuned out. The empty chair next to me meant a wild card patient at some point but I was up for the risk.
Beth, the room house mother (not sure of her title but she sits at a Central desk and guides traffic and takes vitals) took my temp and blood pressure (normal-good)) and brought me an ice water. When Nurse Linda arrived with the positive results of the bloodwork, she applied the I.V. to my port and asked me lots questions about all my past issues and all the new ones. This was a good start. Linda and I are in tune with each other and I feel like I have a medical professional focused on my case. I opened up a little more and asked her the same questions I asked Dr. Scott last week and only received quotes about philosophy of living each day to the fullest: "What can I expect next?". Linda speculated that it might be 3 months between CT scans. That would give me to about the end of the year to practice a new normal. That is something I can work with.
The I.V.s start with lots of hydration with incorporation of trace minerals. The good anti-nausea drug bags are added next, buffering the wicked, killer drugs that will be added hours later.
I fussed with my iPad that seemed to be having difficulty connecting to the free wifi network. Turns out they added a new level of security that requires the pressing of an "I agree" button each time I log on, to absolve the hospital from some kind of liability I suppose. I read my important email and deleted all the junk. I caught up on reading news, wisdom, gossip and entertainment on the recent Facebook updates of my friends just in time to look up as my old actual flesh and blood friend, Steve Klamer, (from high school) strode in and plunked into my visitor chair. Steve had just finished morning chores (dealing with the last of the corn silage) on his brother's farm.
Steve lives in Seattle where he is a fine carpenter specializing in barroom counters and fine wood embellishments. He also invented the "butt-board" which applies a fulcrum behind the non-tapered edge of a drywall board and creates a taper with an adjoining non-tapered board. Perfect for large ceiling installations. Steve also was a mountain climber with an impressive list of conquests. His love of solitary work, philosophy and deep thinking, and a serious shoulder injury has him considering a change of career, possibly taking up long distance truck driving. Steve's high school job was working on a dairy farm. This was fascinating to me since everyone else I knew had jobs like dish washing and lawn mowing. Once or twice I got up at 4:00a.m. to observe his pre school day routine. I still remember his routine and all the crazy things he told me about the business. Eventually, he even had the job of "AI", artificially inseminating the cows with this really expensive, champion bull semen, imported from the west coast that was preserved in tubes submerged in liquid nitrogen. I watched him do this! Having this knowledge of the cow business in his back pocket prepares him to come to Michigan for a month or two in the busy season to help his brother, who runs a small Dairy farm by himself.
After setting Steve up with some coffee, we immediately launched into an extended discussion about the farming business in this new era of climate change (most farmers are in denial according to Steve) and genetically modified foods. Steve believes cows are meant to be grass fed. He also believes genetically modified seeds are resulting in a food chain that is effecting animals and humans in uncertain and slow to recognize ways. It will be the new, less healthy "normal". He speaks from some authority as a person with some pretty serious digestive conditions including diabetes and an advanced gluten allergy that incapacitated him for a few years. He's on a natural medicines kick that has transformed his life. He also wants to cure my cancer.
Amy, my nutritionist popped in to discuss all my eating issues. It was very timely. I had wanted to know about probiotic supplements. Steve joined a very engaging discussion that also included Amy's intern. The conversation eventually broke up as the first and main course of chemotherapy arrived. At this point I'm feeling really good. Fluids are topped off. Blood chemistry is rockin'. Buffer drugs are doing their thaang. Attitude is tip top. I'm ready for the hour and a half drip session.
I pulled some Gala apples out of my bag and Steve and I munched and while we engaged in more topics of discussion. The first course of chemo dripped to a conclusion in no time it seemed. The chime came on and was eventually turned off to keep the peace by another nurse. Nurse Linda had gotten slammed with other patients all at once and finally dropped by to tell me she still needed to finish up with one more person before she could administer course two. That chemical needs to be administered manually through a syringe over a 10 minute time frame. She would be tied to me for that period so she needed to clear the transitions of other patients first.
That second direct infusion seemed to go very fast; all of a sudden, Linda was disconnecting my port. She booted us out the door and I was still in high spirits and not feeling sick at all. From experience, I know that discomfort will come tomorrow and build up to Friday when I come back again to have my fluids reset one last time for this series.
I invited Steve to follow me home for some homemade gluten-free chili. I'm exploiting my current and perhaps last (for a while) pang of hunger before the chemo really takes effect. With chili, Steve and I share some of the natural medicine that he has brought along with him. Then he is off; out the door to do something about a field of soybeans.
I'm still feeling real good when my cell phone text message chime goes off alerting me that Alice's plane has landed in Grand Rapids. She has arranged her own airport pick up. So I engage myself with a large dish of corn tortilla enchiladas verde, knowing that by the time they are ready to come out of the oven, I'll have my regular family, plus one root family member present to enjoy them.
They were late calling me in for the requisite bloodwork and when I sat down in Dawn's chair (Dawn is the primo Phlebotomist), I got a bit of the story when the second Phlebotomist arrived (I don't know her name but based on one experience with her, she is on the opposite side of the competence scale from Dawn.) Dawn exclaimed, "Where have you been?". The D-list Phlebotomist glared back with a "You don't want to know" expression. I didn't want to know. I was only grateful to be sitting in Dawn's chair prepared for an efficient, nearly painless blood extraction.
When I moved on to my favorite comfy recliner in the lounge, I popped a greek yogurt with strawberries and assessed my surroundings. The lovely African American woman in my direct eyeline was quietly reading from a computer tablet. A sleeping older man in the lounge chair next to her was being attended by Nurse Linda, my nurse, and that meant she would be in the vicinity more often. Behind me on the other side of the half-wall was lots of chatter but it was all in Spanish and could be tuned out. The empty chair next to me meant a wild card patient at some point but I was up for the risk.
Beth, the room house mother (not sure of her title but she sits at a Central desk and guides traffic and takes vitals) took my temp and blood pressure (normal-good)) and brought me an ice water. When Nurse Linda arrived with the positive results of the bloodwork, she applied the I.V. to my port and asked me lots questions about all my past issues and all the new ones. This was a good start. Linda and I are in tune with each other and I feel like I have a medical professional focused on my case. I opened up a little more and asked her the same questions I asked Dr. Scott last week and only received quotes about philosophy of living each day to the fullest: "What can I expect next?". Linda speculated that it might be 3 months between CT scans. That would give me to about the end of the year to practice a new normal. That is something I can work with.
The I.V.s start with lots of hydration with incorporation of trace minerals. The good anti-nausea drug bags are added next, buffering the wicked, killer drugs that will be added hours later.
I fussed with my iPad that seemed to be having difficulty connecting to the free wifi network. Turns out they added a new level of security that requires the pressing of an "I agree" button each time I log on, to absolve the hospital from some kind of liability I suppose. I read my important email and deleted all the junk. I caught up on reading news, wisdom, gossip and entertainment on the recent Facebook updates of my friends just in time to look up as my old actual flesh and blood friend, Steve Klamer, (from high school) strode in and plunked into my visitor chair. Steve had just finished morning chores (dealing with the last of the corn silage) on his brother's farm.
Steve lives in Seattle where he is a fine carpenter specializing in barroom counters and fine wood embellishments. He also invented the "butt-board" which applies a fulcrum behind the non-tapered edge of a drywall board and creates a taper with an adjoining non-tapered board. Perfect for large ceiling installations. Steve also was a mountain climber with an impressive list of conquests. His love of solitary work, philosophy and deep thinking, and a serious shoulder injury has him considering a change of career, possibly taking up long distance truck driving. Steve's high school job was working on a dairy farm. This was fascinating to me since everyone else I knew had jobs like dish washing and lawn mowing. Once or twice I got up at 4:00a.m. to observe his pre school day routine. I still remember his routine and all the crazy things he told me about the business. Eventually, he even had the job of "AI", artificially inseminating the cows with this really expensive, champion bull semen, imported from the west coast that was preserved in tubes submerged in liquid nitrogen. I watched him do this! Having this knowledge of the cow business in his back pocket prepares him to come to Michigan for a month or two in the busy season to help his brother, who runs a small Dairy farm by himself.
After setting Steve up with some coffee, we immediately launched into an extended discussion about the farming business in this new era of climate change (most farmers are in denial according to Steve) and genetically modified foods. Steve believes cows are meant to be grass fed. He also believes genetically modified seeds are resulting in a food chain that is effecting animals and humans in uncertain and slow to recognize ways. It will be the new, less healthy "normal". He speaks from some authority as a person with some pretty serious digestive conditions including diabetes and an advanced gluten allergy that incapacitated him for a few years. He's on a natural medicines kick that has transformed his life. He also wants to cure my cancer.
Amy, my nutritionist popped in to discuss all my eating issues. It was very timely. I had wanted to know about probiotic supplements. Steve joined a very engaging discussion that also included Amy's intern. The conversation eventually broke up as the first and main course of chemotherapy arrived. At this point I'm feeling really good. Fluids are topped off. Blood chemistry is rockin'. Buffer drugs are doing their thaang. Attitude is tip top. I'm ready for the hour and a half drip session.
I pulled some Gala apples out of my bag and Steve and I munched and while we engaged in more topics of discussion. The first course of chemo dripped to a conclusion in no time it seemed. The chime came on and was eventually turned off to keep the peace by another nurse. Nurse Linda had gotten slammed with other patients all at once and finally dropped by to tell me she still needed to finish up with one more person before she could administer course two. That chemical needs to be administered manually through a syringe over a 10 minute time frame. She would be tied to me for that period so she needed to clear the transitions of other patients first.
That second direct infusion seemed to go very fast; all of a sudden, Linda was disconnecting my port. She booted us out the door and I was still in high spirits and not feeling sick at all. From experience, I know that discomfort will come tomorrow and build up to Friday when I come back again to have my fluids reset one last time for this series.
I invited Steve to follow me home for some homemade gluten-free chili. I'm exploiting my current and perhaps last (for a while) pang of hunger before the chemo really takes effect. With chili, Steve and I share some of the natural medicine that he has brought along with him. Then he is off; out the door to do something about a field of soybeans.
I'm still feeling real good when my cell phone text message chime goes off alerting me that Alice's plane has landed in Grand Rapids. She has arranged her own airport pick up. So I engage myself with a large dish of corn tortilla enchiladas verde, knowing that by the time they are ready to come out of the oven, I'll have my regular family, plus one root family member present to enjoy them.
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